Muscular Dystrophy Association - Taking Action for MDA Familieshttps://www.mda.org/taxonomy/term/105
enLove – and Optimism – Abounds at Dutch Bros. in Year 10 of Partnership to End ALShttps://www.mda.org/love-%E2%80%93-and-optimism-%E2%80%93-abounds-dutch-bros-year-10-partnership-end-als
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><figure id="attachment_1544" style="width: 300px" class="wp-caption alignright"><img class="wp-image-1544 size-medium" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092344/Drink-1-for-Dane-Day-4-300x226.jpg" alt="" width="300" height="226" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092344/Drink-1-for-Dane-Day-4-300x226.jpg 300w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092344/Drink-1-for-Dane-Day-4.jpg 526w" sizes="(max-width: 300px) 100vw, 300px" /><figcaption class="wp-caption-text"><em>Travis and Dane (right) Boersma</em></figcaption></figure></p>
<p><u> </u>For the past 10 years, MDA families have benefited from a potent, if nontraditional, ally in their fight to end ALS: coffee.</p>
<p>Yes, the seemingly simple beverage that millions of people across the country rely on each morning to start their days has helped raise nearly $2 million for ALS research and family support services. This is thanks to the incredible generosity, enthusiasm and spirit of <a href="http://dutchbros.com/">Dutch Bros. Coffee</a>.</p>
<p>Based in Grants Pass, Ore., Dutch Bros. has more than 260 drive-thru coffee stands in the western United States, including in Arizona, California, Colorado, Idaho, Nevada, Oregon and Washington. Founded in 1992 by dairy farmer brothers Dane and <a href="http://www.bizjournals.com/portland/blog/sbo/2014/08/a-chat-with-dutch-bros-s-travis-boersma.html">Travis Boersma</a>, the company is “all about being positive and lovin’ life,” according to its website.</p>
<p><figure id="attachment_1545" style="width: 150px" class="wp-caption alignleft"><img class="wp-image-1545 size-thumbnail" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092358/Drink-1-for-Dane-Day-3-150x150.jpg" alt="" width="150" height="150" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092358/Drink-1-for-Dane-Day-3-150x150.jpg 150w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092358/Drink-1-for-Dane-Day-3-300x298.jpg 300w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092358/Drink-1-for-Dane-Day-3.jpg 604w" sizes="(max-width: 150px) 100vw, 150px" /><figcaption class="wp-caption-text"><em>In 2015, Dutch Bros. raised nearly $507,000 — the best year yet!</em></figcaption></figure></p>
<p>That optimistic outlook helped the company deal with founder Dane’s ALS diagnosis in 2005. In true Dutch Bros. fashion, the community rallied to launch <a href="http://www.prweb.com/releases/2016/05/prweb13381605.htm">“Drink One for Dane” Day</a> in partnership with MDA. In 2007, its first year, Dutch Bros. raised $54,000. In 2015, “Drink One for Dane” Day proceeds had increased nearly tenfold to more than $507,000.</p>
<p>This year’s event, the tenth “Drink One for Dane” collaboration, is scheduled for May 6, 2016, and promises to be even bigger. “It’s hard to believe it has been ten years and we hope everyone will join us to make this the best year yet,” said Dutch Bros. cofounder Travis Boersma.</p>
<p><figure id="attachment_1547" style="width: 254px" class="wp-caption alignright"><img class="wp-image-1547 size-medium" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092354/Drink-1-for-Dane-Day-1-254x300.jpg" alt="" width="254" height="300" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092354/Drink-1-for-Dane-Day-1-254x300.jpg 254w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092354/Drink-1-for-Dane-Day-1.jpg 478w" sizes="(max-width: 254px) 100vw, 254px" /><figcaption class="wp-caption-text"><em>The 10th anniversary of “Drink One for Dane” Day will be held on May 6, 2016</em></figcaption></figure></p>
<p>Although <a href="http://www.mailtribune.com/article/20091016/news/910160321">Dane passed away</a> in 2009, his memory lives on. “His spirit is present daily and everyone, whether they knew him personally or not, feels it,” says Jennifer Wheatley, director of Dutch Bros.’s Love Abounds Foundation.</p>
<p>“Dane is referred to as the Wiseman at Dutch Bros.,” Wheatley continues, and he “inspire(s) everyone at Dutch Bros. to give their all, love every person they encounter and do more for others than for themselves,” according to the company’s web site.</p>
<p>Dane’s love of life and generous spirit also resound in the immeasurable impact that Dutch Bros.’s combined $1.7 million contribution has had on ALS research, support services and advocacy.</p>
<p>“As the Boersmas understand, and in watching others face the realities of this disease, it is paramount that families have access to high-quality support and services,” says Wheatley. “But even more important to us is the work that is going on to identify treatments that could arrest the progression of symptoms and ultimately cure ALS. We would love to see the day when we can celebrate the end of this disease and take on a new challenge.”</p>
<p>Dutch Bros. chose MDA to be its partner in the fight because of the size and scope of our commitment to freeing individuals, and the families who love them, from the harmful effects of muscle-debilitating diseases.</p>
<p>The world leader in funding <a href="https://www.mda.org/disease/amyotrophic-lateral-sclerosis">ALS</a> research and services, MDA does more than any other organization to fight ALS. Since 1950, MDA has invested more than $150 million in research projects in the hopes of finding treatments and eventually cures. Each year, more than 12,000 patients living with ALS receive expert care at one of <a href="https://www.mda.org/services/your-mda-care-center">43 MDA ALS Care Centers</a> located throughout the country.</p>
<p>“We’re able to support the best of the best in neuromuscular disease research thanks to the generous support of Dutch Bros.,” says Grace Pavlath, Ph.D., Senior Vice President and Scientific Program Director with MDA. “It’s with their steadfast support that MDA can continue to fund the research that will turn the hope for breakthroughs into reality.”</p>
<p>Wondering what to expect when you head out for your White Chocolate Mocha or a Blended Dutch Freeze on May 6? “Drink One for Dane” Day is, first and foremost, a party, says Wheatley. “That’s what Dane thought a coffee shop should feel like daily. There are lines everywhere and it’s an all hands on deck moment for the company.”</p>
<p><figure id="attachment_1546" style="width: 300px" class="wp-caption alignleft"><img class="wp-image-1546 size-medium" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092351/Drink-1-for-Dane-Day-2-300x239.jpg" alt="" width="300" height="239" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092351/Drink-1-for-Dane-Day-2-300x239.jpg 300w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/02092351/Drink-1-for-Dane-Day-2.jpg 744w" sizes="(max-width: 300px) 100vw, 300px" /><figcaption class="wp-caption-text"><em>Broistas get in the spirit for “Drink One for Dane” Day</em></figcaption></figure></p>
<p>“Broistas,” as the enthusiastic and friendly coffee sellers are known, compete to design the best donation jar and decorate their stands to reflect the festive atmosphere.</p>
<p>“Everyone has on their ‘Drink One for Dane’ shirts and everyone is focused on raising funds and supporting families that are facing this disease,” Wheatley says.</p>
<p>“It’s an amazing day,” says Oregon MDA Executive Director Amy Ward. “MDA is so grateful to be a part of this incredible celebration. We couldn’t ask for better and more generous partners than Dutch Bros., their employees and their customers.”</p>
<p>Far from being a day of mourning, instead it’s a day for celebration, to honor the life of the Wiseman and to connect customers to the Dutch Bros. philosophy of “Love abounds.”</p>
<p>“All in all it’s a positive day, filled with positive energy that supports such important work,” says Wheatley.</p>
<p>To find a Dutch Bros. location near you, visit <a href="http://www.dutchbros.com/locations">www.dutchbros.com/locations</a>.</p>
<p>The post <a rel="nofollow" href="https://strongly.mda.org/love-and-optimism-abounds-at-dutch-bros-in-year-10-of-partnership-to-end-als/">Love – and Optimism – Abounds at Dutch Bros. in Year 10 of Partnership to End ALS</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div><div class="field-item odd"><a href="/taxonomy/term/110" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Amyotrophic Lateral Sclerosis (ALS)</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/love-and-optimism-abounds-at-dutch-bros-in-year-10-of-partnership-to-end-als/</div></div></div>Tue, 13 Jun 2017 16:35:26 +0000Anonymous34341 at https://www.mda.orghttps://www.mda.org/love-%E2%80%93-and-optimism-%E2%80%93-abounds-dutch-bros-year-10-partnership-end-als#commentsERA Helps Hundreds of Kids Have the &#8220;Best Week of the Year&#8221; at MDA Summer Camphttps://www.mda.org/era-helps-hundreds-kids-have-%E2%80%9Cbest-week-year%E2%80%9D-mda-summer-camp
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><figure id="attachment_1570" style="width: 300px" class="wp-caption alignleft"><img class="wp-image-1570 size-medium" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141121/regan-and-charlie-300x225.jpg" alt="regan and charlie" width="300" height="225" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141121/regan-and-charlie-300x225.jpg 300w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141121/regan-and-charlie.jpg 640w" sizes="(max-width: 300px) 100vw, 300px" /><figcaption class="wp-caption-text"><em>Reagan and Charlie make a pretty picture</em></figcaption></figure></p>
<p>For more than 35 years, <a href="https://www.era.com/">ERA </a>Real Estate has been committed to enriching the lives of children and adults living with Muscular Dystrophy and other neuromuscular diseases through its support of MDA. In particular, the ERA network has been helping kids living with muscular dystrophy, SMA and related muscle-debilitating diseases have “the best week of the year” at MDA Summer Camp.</p>
<p>In 2015, CEO Charlie Young announced an ambitious goal of sending 1,000 kids to MDA Summer Camp over the next three years. One year into the challenge, ERA has committed to funding more than 670 kids.</p>
<p><figure id="attachment_1569" style="width: 300px" class="wp-caption alignright"><img class="wp-image-1569 size-medium" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141118/regan-ERA-300x225.jpg" alt="regan ERA" width="300" height="225" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141118/regan-ERA-300x225.jpg 300w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141118/regan-ERA.jpg 640w" sizes="(max-width: 300px) 100vw, 300px" /><figcaption class="wp-caption-text"><em>Reagan is excited about her new job: Strongly correspondent! </em></figcaption></figure></p>
<p>Reagan Imhoff, MDA’s National Goodwill Ambassador Emeritus, recently caught up with Charlie and a few hundred other of her ERA pals at the 2016 ERA International Business Conference in Orlando, Fla., where she asked him a few questions about summer camp, travelling and favorite pizza toppings.</p>
<p>Reagan: My favorite part of being an MDA Goodwill Ambassador is traveling and meeting new people. What’s your favorite part of being President of ERA?</p>
<p>Charlie: I’d say that’s my favorite part of my job too. As president and CEO of ERA Real Estate I get to travel all over the United States and even to many countries around the world. I go to big cities like San Francisco and Singapore and I go to small towns across America like Anniston, Alabama or Jackson, Michigan and many others in between. The best part is getting to meet so many great people everywhere I go.</p>
<p>R: You told everyone at the ERA meeting in Orlando that you had a big goal for MDA this year. How many kids are you trying to send to MDA Summer Camp?</p>
<p>C: In March of 2015 we set a goal of sending 1,000 kids to MDA Summer Camp by 2018. So far the affiliates of ERA have committed to send 690 kids to camp. So we are way ahead of schedule and I hope we hit 1,000 in 2017….one year early. You should see how our ERA companies are sending kids to camp. They host raffles, art auctions (I know you love art), bowl-a-thons and even carnivals.</p>
<p><figure id="attachment_1568" style="width: 300px" class="wp-caption alignleft"><img class="wp-image-1568 size-medium" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141126/regan-ERA-2-300x225.jpg" alt="regan ERA 2" width="300" height="225" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141126/regan-ERA-2-300x225.jpg 300w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/06141126/regan-ERA-2.jpg 640w" sizes="(max-width: 300px) 100vw, 300px" /><figcaption class="wp-caption-text"><em>Reagan and friends at the “Riber Run and Dance Party” fundraiser for MDA, in honor of the late Jeff Riber Sr., which raised more than $25,000. </em></figcaption></figure></p>
<p>R: You seem to know a lot about kids and summer camp. Did you ever go to a Summer Camp when you were little?</p>
<p>C: I did go to summer camp. I went to a sailing camp in Maine. It was so much fun and I have many good memories. I liked it so much I went back when I was in college and worked as a counselor.</p>
<p>R: What was your favorite part of camp?</p>
<p>C: I loved getting away from my brother and sister and spending so much time outside. It was a real adventure for me.</p>
<p>R: You do a lot to help kids like me. What’s your favorite part about helping MDA?</p>
<p>C: I like knowing we are contributing to giving kids a great experience where they can have tons of fun and make great memories. There is nothing like seeing a smile on a kid’s face. I also like knowing that the experiences that kids have at camp are important to developing them in to grown-ups.</p>
<p>R: If you could be an animal, what would you be? Why?</p>
<p>C: I would be a dog. Dogs get to have fun all day running around getting dirty, digging in the dirt, and getting in to mischief. Then they get to fall asleep (on the couch I hope) and someone scratches their tummy. Usually dogs have a great kid hanging around them too to make things even more fun. Dogs are really smart and useful too. They all have a purpose…some use their noses to find things, others like retrieving stuff, others are good helpers for people with special needs. Hopefully I’d live with a really nice family!</p>
<p>R: What’s your favorite pizza topping?</p>
<p>C: I love pizza and I like almost every topping except pineapple. If I had to pick, I’d say sausage…or mushrooms…or peppers…or…extra cheese. Yum….now I’m hungry.</p>
<p>R: When you were in school, did you like writing or math better?</p>
<p>C: I wasn’t very good at math, so I’d have to say writing. I wish I got extra help with math in school because now I use math all the time in my job and I’ve had to teach myself as an adult. So my advice to kids is that if they don’t like math they should find a way to learn it anyway because they will use math their entire lives.</p>
<p>The post <a rel="nofollow" href="https://strongly.mda.org/era-helps-hundreds-of-kids-have-the-best-week-of-the-year-at-mda-summer-camp/">ERA Helps Hundreds of Kids Have the “Best Week of the Year” at MDA Summer Camp</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div><div class="field-item odd"><a href="/taxonomy/term/114" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Summer Camp</a></div><div class="field-item even"><a href="/taxonomy/term/117" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Goodwill Ambassadors</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/era-helps-hundreds-of-kids-have-the-best-week-of-the-year-at-mda-summer-camp/</div></div></div>Tue, 13 Jun 2017 16:35:26 +0000Anonymous34326 at https://www.mda.orghttps://www.mda.org/era-helps-hundreds-kids-have-%E2%80%9Cbest-week-year%E2%80%9D-mda-summer-camp#commentsIndiana Man ‘Muscle Walks’ for the Next Generationhttps://www.mda.org/indiana-man-%E2%80%98muscle-walks%E2%80%99-next-generation
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><figure id="attachment_1591" style="width: 169px" class="wp-caption alignright"><img class="wp-image-1591 size-medium" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/10140951/Stuart-2-169x300.jpg" alt="Stuart 2" width="169" height="300" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/10140951/Stuart-2-169x300.jpg 169w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/10140951/Stuart-2.jpg 540w" sizes="(max-width: 169px) 100vw, 169px" /><figcaption class="wp-caption-text"><em>Stuart and his grandson Paxton</em></figcaption></figure></p>
<p>Three-year-old Paxton is the tiny, grinning powerhouse that keeps his grandpa, Stuart Horton, going. His smile gets Stuart out of bed every morning and, even though it’s tough for the 53-year-old with <a href="https://www.mda.org/disease/charcot-marie-tooth">Charcot-Marie-Tooth</a> disease to travel, it’s his grandson’s future that motivates Stuart to participate in <a href="https://secure2.convio.net/mda/site/SPageNavigator/musclewalk_splash">MDA Muscle Walk</a> this year.</p>
<p>“It’s the simple things in life that are such a problem for me. I don’t want them to have to worry about showering and falling,” he says of his grandson and daughter, Samantha. “I want them to be able to not have complications. I’d rather them be free of everything I’ve had to deal with.”</p>
<p>Diagnosed with CMT at 26 years old, the former cabinet maker and graphic designer has trouble with recurring numbness in his right arm. He has difficulty controlling his hands and weakness in his legs. The discs in his spine and neck have deteriorated, leaving him in pain, and he’s taken some bad falls, which have forced him back into using a wheelchair.</p>
<p>His daughter is 26 years old — the same age Stuart was when he found out he had CMT. She, too, lives with CMT and has challenges with muscle weakness. Paxton will need to be checked soon too.</p>
<p><figure id="attachment_1592" style="width: 300px" class="wp-caption alignleft"><img class="wp-image-1592 size-medium" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/10140942/Stuart-1-300x300.jpg" alt="Stuart 1" width="300" height="300" srcset="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/10140942/Stuart-1-300x300.jpg 300w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/10140942/Stuart-1-150x150.jpg 150w, https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/05/10140942/Stuart-1.jpg 311w" sizes="(max-width: 300px) 100vw, 300px" /><figcaption class="wp-caption-text"><em>Stuart with his daughter Samantha and grandson</em></figcaption></figure></p>
<p>Stuart wants a cure, but not necessarily to help himself. He wants a cure for the next generation. He wants it for his family.</p>
<p>“I am hopeful that they find something for the youth and the younger generation — a promise that they will have a better life, a better future and fewer complications,” he says.</p>
<p>That’s why Stuart makes the effort to be a part of Muscle Walk, even though getting out of the house is tough for him. He says no one should have to go through what he has, especially the kids.</p>
<p>“It’s for a good cause,” he says of the walk. “MDA helped me a lot since I was diagnosed, so I’ve figured at least I could give back in that way.”</p>
<p>Stuart sees Dr. Robert Pascuzzi, a neurologist affiliated with the <a href="https://www.mda.org/services/your-mda-care-center">MDA Care Center</a> at Indiana University Hospital in Indianapolis. Dr. Pascuzzi has been good to him, he says, and helps him manage his pain, so he can live as comfortably as possible.</p>
<p>“Any time I’ve had a problem, he’s helped me and the MDA has helped me,” Stuart says, explaining that the MDA helps him get the injections in his spine and neck that he needs to control the pain and has assisted him with getting new leg braces.</p>
<p>Stuart isn’t shy about asking for donations to MDA so others can get the help that they need, too. Stuart has been handing out fliers and posted on Facebook to fundraise for his team, <a href="https://secure2.convio.net/mda/site/Donation2;jsessionid=2CBCD94AC46989D2849876286B9A12A7.app295a?df_id=6937&amp;FR_ID=21929&amp;PROXY_ID=73462&amp;PROXY_TYPE=22&amp;6937.donation=form1">Horton Clan,</a> which will be participating at the <a href="https://www.google.com/url?sa=t&amp;rct=j&amp;q=&amp;esrc=s&amp;source=web&amp;cd=1&amp;cad=rja&amp;uact=8&amp;ved=0ahUKEwj_9MnCm9DMAhVH1WMKHX3NDJIQFggcMAA&amp;url=http%3A%2F%2Fwww.downtownindy.org%2Fevents%2F1447%2Fmda-muscle-walk%2F&amp;usg=AFQjCNEbyf8ixG1Ioxn59n9Dddl7yiK4Wg&amp;sig2=QpOKGzfHePXRmSjQUuvO7A">Muscle Walk in May at White River Park in Indianapolis</a>.</p>
<p>This will be Stuart’s second time participating, with his team of family and friends. The first time they attended, Paxton did crafts with his mom and went gaga over the fire truck parked at the event.</p>
<p>In all, it was a wonderful experience, and Stuart appreciates the fun, supportive atmosphere. It helps ease his worries about his disease and the future.</p>
<p>“The walk takes away a little bit from thinking about it all the time — takes your mind away for a little while at least,” he says.</p>
<p><em>Interested in walking with and for families like the Hortons? Learn more <a href="https://secure2.convio.net/mda/site/SPageNavigator/musclewalk_splash"><img class="alignnone wp-image-1588 size-full" src="https://s3.amazonaws.com/mda-strongly/wp-content/uploads/2016/04/18182930/Learn-more.png" alt="Learn more" width="125" height="143" /></a></em></p>
<p> </p>
<p>The post <a rel="nofollow" href="https://strongly.mda.org/indiana-man-muscle-walks-for-the-next-generation/">Indiana Man ‘Muscle Walks’ for the Next Generation</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div><div class="field-item odd"><a href="/taxonomy/term/119" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Muscle Walk</a></div><div class="field-item even"><a href="/taxonomy/term/109" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Personal Stories</a></div><div class="field-item odd"><a href="/taxonomy/term/112" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Charcot-Marie-Tooth Disease (CMT)</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/indiana-man-muscle-walks-for-the-next-generation/</div></div></div>Tue, 13 Jun 2017 16:35:26 +0000Anonymous34311 at https://www.mda.orghttps://www.mda.org/indiana-man-%E2%80%98muscle-walks%E2%80%99-next-generation#commentsMeet the Shamrockstars 2016: Fultonhttps://www.mda.org/meet-shamrockstars-2016-fulton-0
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p>Shamrock <img class="alignright size-medium wp-image-1051" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/11170531/Fulton-Shamrock-234x300.jpg" alt="Fulton Shamrock" width="234" height="300" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/11170531/Fulton-Shamrock-234x300.jpg 234w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/11170531/Fulton-Shamrock.jpg 588w" sizes="(max-width: 234px) 100vw, 234px" />season is right around the corner! Pretty soon, your local retailers will be going green for MDA. <a href="https://www.mda.org/get-involved/shamrocks">MDA’s iconic paper Shamrocks</a> sell for $1, $5 or more in tens of thousands of retail locations across the country each February and March and help families live longer and grow stronger.</p>
<p>This year, MDA Shamrocks feature six kids from across the country. Over the next six weeks, we’ll be introducing them here on Strongly. And now… a round of applause for our first Shamrockstar of 2016: Fulton.</p>
<blockquote><p><strong>Fulton Mantoan</strong></p>
<p><strong> Age: </strong>7</p>
<p><strong>Hometown: </strong>Sicklerville, NJ</p>
<p><strong>Diagnosis: </strong>SMA II</p>
<p><strong>What it’s like being on an MDA Shamrock: </strong>Fulton’s mom Kelly says: “I was really honored and flattered that Fulton was chosen, but I wasn’t surprised when I saw the photo because in it his face radiates joy. That joy represents what camp is and what the experience with MDA has been. From clinic to Summer Camp to MDA events, the experience is always so happy and positive, and Fulton’s photo radiates that happiness. MDA helps bring happiness and joy, and I am glad that Fulton was selected to represent that.”</p>
<p><strong>Home &amp; family life: </strong>Fulton is part of a family of 7; he is the 4th of 5 children and his younger brother Teddy also has SMA. The family homeschools their children and are active with their church and scouting with the Federation of North American Explorers. They love going to the beach.</p>
<p><strong>Favorite school subject: </strong>Fulton loves learning about science and talks about wanting to be a scientist when he grows up.</p>
<p><strong>Interests &amp; Activities: </strong>Transformers and Star Wars</p>
<p><strong>MDA Camp and Care Centers: </strong>Fulton attended Summer Camp at Variety Club in Pennsylvania for the first time last year at the age of 6. Fulton was diagnosed right before he turned 1 at the MDA Care Center at Children’s Hospital of Philadelphia. He has been a patient at the MDA Care Center at Johns Hopkins University ever since.</p>
<p><strong>How the Mantoan family “lives unlimited”: </strong>According to mom Kelly, “The boys are not dying of SMA, but living with it. Our family is living a happy, normal life and SMA is just a small part of it.”</p>
</blockquote>
<p> </p>
<p><strong> </strong></p>
<p>The post <a rel="nofollow" href="https://strongly.mda.org/meet-the-shamrockstars-2016-fulton/">Meet the Shamrockstars 2016: Fulton</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div><div class="field-item odd"><a href="/taxonomy/term/114" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Summer Camp</a></div><div class="field-item even"><a href="/taxonomy/term/116" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">MDA Shamrocks</a></div><div class="field-item odd"><a href="/taxonomy/term/118" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Spinal Muscular Atrophy (SMA)</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/meet-the-shamrockstars-2016-fulton/</div></div></div>Wed, 22 Feb 2017 06:39:22 +0000Anonymous34591 at https://www.mda.orghttps://www.mda.org/meet-shamrockstars-2016-fulton-0#commentsMeet the Shamrockstars 2016: Tylerhttps://www.mda.org/meet-shamrockstars-2016-tyler-0
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p>Shamrock <img class="alignright size-medium wp-image-1065" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19144956/Tyler-shamrock-300x278.jpg" alt="Tyler shamrock" width="300" height="278" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19144956/Tyler-shamrock-300x278.jpg 300w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19144956/Tyler-shamrock.jpg 634w" sizes="(max-width: 300px) 100vw, 300px" />season is full swing! Have your local retailers gone green for MDA yet? <a href="https://www.mda.org/get-involved/shamrocks">MDA’s iconic paper Shamrocks</a> sell for $1, $5 or more in tens of thousands of retail locations across the country each February and March and help families live longer and grow stronger.</p>
<p>You can support MDA Shamrocks by adding this <a href="http://twibbon.com/Support/shamrocks">Twibbon </a>to your social media profiles and encouraging your friends to do the same. Don’t forget to share the link or use the pre-populated Facebook and Twitter posts on the campaign page to help others easily learn how they can change their profiles, too<img class="wp-image-1072 size-medium alignnone" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19152127/Twibbon-example-300x114.jpg" alt="" width="300" height="114" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19152127/Twibbon-example-300x114.jpg 300w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19152127/Twibbon-example.jpg 517w" sizes="(max-width: 300px) 100vw, 300px" /></p>
<p>This year, MDA Shamrocks feature six kids from across the country, and we’ll be introducing them here on Strongly. And now… meet Shamrockstar Tyler, who will be featured exclusively on MDA Shamrocks sold at <a href="http://www.lowes.com/">Lowe’s</a> Home Improvement stores nationwide through March 31. This year marks 15 years of Lowe’s Shamrocks support. In 2015, Lowe’s raised $7.5 million for MDA during the Shamrocks program, reaching the $50 million mark in overall funds raised since first teaming up with MDA in 2001. So make sure you stop in today to your local Lowe’s to buy your Shamrock!</p>
<blockquote><p><strong>Tyler </strong></p>
<p><strong>Age: </strong>6</p>
<p><strong>Hometown: </strong>Tuscon, AZ</p>
<p><strong>Diagnosis: </strong>Charcot-Marie-Tooth Disease<strong> </strong>(CMT)</p>
<p><strong>What it’s like being on an MDA Shamrock: </strong>Tyler is a bit modest about his new-found fame. He says being the face of MDA Shamrocks is “Ok.” Then, reconsidering, he says “It’s cool.”</p>
<p><strong>Home &amp; family life: </strong>Tyler lives with his parents, Alan &amp; Zie, an 11-year-old brother and his grandparents.</p>
<p><strong>Favorite school subject: </strong>Tyler loves to draw, so, naturally, this first grader’s favorite subject is art.</p>
<p><strong>Interests &amp; Activities: </strong>Cars and superheroes</p>
<p><strong>MDA Camp and Care Centers: </strong>Tyler attended MDA Summer Camp for the first time last year and loved it so much he cried the whole way home because he didn’t want it to be over! He sees Dr. Katalin Scherer at Children’s Clinics For Rehabilitative Services in Tucson.</p>
<p> </p>
</blockquote>
<p>The post <a rel="nofollow" href="https://strongly.mda.org/meet-the-shamrockstars-2016-tyler/">Meet the Shamrockstars 2016: Tyler</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div><div class="field-item odd"><a href="/taxonomy/term/116" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">MDA Shamrocks</a></div><div class="field-item even"><a href="/taxonomy/term/112" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Charcot-Marie-Tooth Disease (CMT)</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/meet-the-shamrockstars-2016-tyler/</div></div></div>Wed, 22 Feb 2017 06:39:21 +0000Anonymous34581 at https://www.mda.orghttps://www.mda.org/meet-shamrockstars-2016-tyler-0#commentsStrength in Numbershttps://www.mda.org/strength-numbers-0
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p>I<img class="alignright size-full wp-image-1129" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/26223815/RDD.jpg" alt="RDD" width="225" height="225" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/26223815/RDD.jpg 225w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/26223815/RDD-150x150.jpg 150w" sizes="(max-width: 225px) 100vw, 225px" />n the U.S., a disease is considered “rare” if it impacts fewer than 200,000 people. This broad definition encompasses almost 7,000 diseases —including those under MDA’s umbrella—and includes millions of Americans. In fact, 1 out of every 10 people in the U.S. are currently living with a disease that is classified as “rare.”</p>
<p>When considered together, it’s clear that rare diseases are not rare at all.</p>
<p><a href="http://www.rarediseaseday.org/">Rare Disease Day</a> was established in 2008 in an effort to raise global awareness about rare diseases and takes place each year on the last day of February. Since 2016 is a leap year, the day will be celebrated on February 29.</p>
<p>At MDA we believe that together, we are stronger—and Rare Disease Day helps demonstrate our strength in numbers.</p>
<p>MDA is committed to funding research, providing clinical care and raising awareness about muscular dystrophy, ALS, spinal muscular atrophy and other muscle-debilitating diseases that take away the ability to walk, to talk, to breathe and to hug.</p>
<p>Leveraging our community’s collective voice is critical to help advance programs and public policies that help save and improve the lives of people living with neuromuscular and other rare diseases. By supporting initiatives such as <strong><a href="http://cqrcengage.com/mda/increasenihfunding">increased federal funding for biomedical research</a></strong> and the <strong><a href="http://cqrcengage.com/mda/targetedtherapiesbill">Advancing Targeted Therapies for Rare Diseases Act (S. 2030)</a></strong> our community joins together to advocate for public policies that impact people living with many different diseases—including those MDA serves.</p>
<p>There are many opportunities to get involved this February 29—from encouraging your members of Congress to support legislation that would benefit the rare disease community, to simply sharing your story, to attending a formal gathering in celebration of the day. Rare Disease Day events are held around the world, and the NIH dedicates the entire day to the event with a focus on:</p>
<ul><li>Sharing NIH’s commitment to rare disease research that would help patients and improve development of diagnostics and treatments;</li>
<li>Facilitating dialogue and collaboration among public and private researches, patients, advocates, and policymakers and regulatory agencies.</li>
<li>Gaining insight into the latest rare disease information to advance research and therapeutic efforts.</li>
</ul><p>You can view the schedule for the 2016 NIH events <strong><a href="https://ncats.nih.gov/rdd">here</a>, </strong>and you can also click <strong><a href="https://videocast.nih.gov/summary.asp?live=17929&amp;bhcp=1">here</a></strong> on February 29 to watch a live stream of NIH’s Rare Disease Day program.</p>
<p>The post <a rel="nofollow" href="https://strongly.mda.org/strength-in-numbers/">Strength in Numbers</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/strength-in-numbers/</div></div></div>Wed, 22 Feb 2017 06:39:21 +0000Anonymous34561 at https://www.mda.orghttps://www.mda.org/strength-numbers-0#commentsMeet the Shamrockstars 2016: Paolahttps://www.mda.org/meet-shamrockstars-2016-paola-0
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><img class="alignright size-medium wp-image-1186" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/04171250/Paola-sham-280x300.jpg" alt="Paola sham" width="280" height="300" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/04171250/Paola-sham-280x300.jpg 280w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/04171250/Paola-sham.jpg 288w" sizes="(max-width: 280px) 100vw, 280px" />It’s the second week of March, and you know what that means: it’s full-on Shamrocks season! Retailers across the country are selling <a href="https://www.mda.org/get-involved/shamrocks">MDA’s iconic paper Shamrocks</a> for $1, $5 or more to help families live longer and grow stronger.</p>
<p>Have you added this <a href="http://twibbon.com/Support/shamrocks">Twibbon </a>to your social media profiles yet? Now’s the time! Help MDA turn social media green this March. Don’t forget to share the link or use the pre-populated Facebook and Twitter posts on the campaign page to help others easily learn how they can change their profiles, too.</p>
<p><img class="wp-image-1072 size-medium alignnone" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19152127/Twibbon-example-300x114.jpg" alt="" width="300" height="114" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19152127/Twibbon-example-300x114.jpg 300w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/02/19152127/Twibbon-example.jpg 517w" sizes="(max-width: 300px) 100vw, 300px" /></p>
<p>This year, MDA Shamrocks feature six kids from across the country, and we’ve be introducing them to you here on Strongly. And now let’s meet Shamrockstar Paola, who will be featured exclusively on MDA Shamrocks sold at <a href="http://www.lowes.com/">Lowe’s</a> Home Improvement stores nationwide through March 31. This year marks 15 years of Lowe’s Shamrocks support. In 2015, Lowe’s raised $7.5 million for MDA during the Shamrocks program, reaching the $50 million mark in overall funds raised since first teaming up with MDA in 2001. So make sure you stop in today to your local Lowe’s to buy your Shamrock!</p>
<blockquote><p><strong>Paola</strong></p>
<p><strong>Age: 8</strong></p>
<p><strong>Hometown: </strong>San Diego, CA</p>
<p><strong>Diagnosis: </strong>SMA type 2</p>
<p><strong>What it’s like being on an MDA Shamrock: </strong>Although Paola is a little shy and soft spoken, she did admit that she’s “really excited” about her moment in the spotlight. Her mom said Paola has been proudly telling all her friends that her photo will be on the Shamrocks.</p>
<p><strong>Home &amp; family life: </strong>Paola lives with her mom, dad, and two sisters. Her older sister, Azaleah, is 20 years old and her younger sister, Ximena, is 6. They also have five dogs and an umbrella cockatoo named BomBom – so it is a full house!</p>
<p><strong>Favorite school subject: </strong>Paola is in second grade, and her favorite subject is reading. This December she was in the school Christmas play – she had two lines and worked really hard to make sure she remembered them!</p>
<p><strong>Interests &amp; Activities:</strong> She loves to color and spend time with her little sister Ximena. They love to do arts and crafts together.</p>
<p><strong>MDA Camp and Care Centers: </strong>Paola was diagnosed with SMA type 2 when she was 6 months old at an MDA Clinic<strong>. </strong>Since 2009, Paola has attended the MDA Clinic at Rady Children’s Hospital. and has been going since 2009 (6 years). She attends MDA San Diego’s summer camp in Descanso, CA at Camp Cuyamaca. She started going as soon as she was eligible at age 6 and has attended for the past two years. She absolutely loves camp and is always talking about it!</p>
</blockquote>
<p> </p>
<p>The post <a rel="nofollow" href="https://strongly.mda.org/meet-the-shamrockstars-2016-paola/">Meet the Shamrockstars 2016: Paola</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/meet-the-shamrockstars-2016-paola/</div></div></div>Wed, 22 Feb 2017 06:39:21 +0000Anonymous34531 at https://www.mda.orghttps://www.mda.org/meet-shamrockstars-2016-paola-0#commentsFishing for Muscular Dystrophy: One Man&#8217;s Passion &#8212; and Purposehttps://www.mda.org/fishing-muscular-dystrophy-one-man%E2%80%99s-passion-%E2%80%94-and-purpose-0
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><img class="alignright size-medium wp-image-1331" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092140/IMG_0443-300x200.jpg" alt="IMG_0443" width="300" height="200" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092140/IMG_0443-300x200.jpg 300w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092140/IMG_0443-768x513.jpg 768w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092140/IMG_0443-1024x683.jpg 1024w" sizes="(max-width: 300px) 100vw, 300px" />Muscular dystrophy couldn’t keep Paul Robertson from the water, and he doesn’t want muscle disease to stop anyone from doing what they love.</p>
<p>“When you get on the water, it’s a sense of freedom. It’s just the thrill of the bite, the thrill of the competition, the thrill of being on the water,” the lifelong boater and fisherman said.</p>
<p>That’s why, blending passion and purpose, Paul started Fishing for Muscular Dystrophy (FFMD), a professional fishing team that is raising awareness of muscular dystrophy and funds for the Muscular Dystrophy Association.</p>
<p>A mere 11 months after Paul first approached MDA with his idea, he was captaining a brand new boat with an 8-person team at FFMD’s first tournament — the <a href="http://jjfishweek.com/">Jimmy Johnson National Billfish Championship</a> in Key Largo, Florida.</p>
<p><img class="size-medium wp-image-1329 alignleft" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092126/DSC_1259-300x200.jpg" alt="DSC_1259" width="300" height="200" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092126/DSC_1259-300x200.jpg 300w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092126/DSC_1259-768x512.jpg 768w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092126/DSC_1259-1024x683.jpg 1024w" sizes="(max-width: 300px) 100vw, 300px" />The FFMD team came in sixth out of 31 boats during the competition (a very respectable showing for a maiden voyage) and netted an award for getting the last bite one day. In addition, the group staffed a tent, organized a raffle and sold swag, all to help raise funds and awareness for the MDA.</p>
<p>Paul’s goal is to send $1 million back to MDA each year, raised from tournament winnings, fundraising and corporate sponsorships, like the one from <a href="http://www.evergladesboats.com/">Everglade Boats</a>, the manufacturer that donated a significant portion of the team’s boat fresh off the assembly line.</p>
<p>But Paul’s vision isn’t limited to the fundraising and sponsorships. He also wants to create more teams focused on different kinds of fishing and captained by other fishing enthusiasts who have a muscle disease.</p>
<p>“Why not let someone else feel good about what they can do?” he said.</p>
<p>Paul was diagnosed with limb-girdle muscular dystrophy 15 years ago and was in denial for at least 12 of those years, he said. A bad fall and words from a friend got Paul on the road to where he is today.</p>
<p>“Someone told me, when I first thought about this — when the idea was there and it was on the sidelines — ‘Dreams expire.’ They do,” he said. “So, I couldn’t allow myself to sit back five years from now and all of a sudden find out that maybe I’m in a wheelchair, my mobility has declined, and I can’t do this, and say, ‘I could have done this, but I didn’t.’”</p>
<p>The whole enterprise has been therapeutic for Paul. He’s happy to be doing good, while doing what he loves — being out on the water — and he hopes FFMD can make a difference in others’ lives too.</p>
<p>“To put this in perspective, for me, it’s almost been what allowed me to break out and freely and openly talk about being affected with a muscle disease and not be ashamed of it,” he said. “It is what it is. Big deal. Let’s roll, let’s keep living life, let’s move forward.”</p>
<p>Seeing his vision come to life in Key Largo was fantastic, Paul said. Besides the support from 30-plus family and friends who came to cheer on FFMD, there were other indications that he was on the right path. Paul was thrilled, for example, to meet others who had personal experience with muscular dystrophy and loved what the group was doing.</p>
<p><img class="alignright size-medium wp-image-1330" src="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092137/IMG_0446-225x300.jpg" alt="IMG_0446" width="225" height="300" srcset="https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092137/IMG_0446-225x300.jpg 225w, https://s3.amazonaws.com/strongly-mda/wp-content/uploads/2016/03/28092137/IMG_0446.jpg 720w" sizes="(max-width: 225px) 100vw, 225px" />“It’s priceless. You can’t put a value on doing that,” he said. “Sitting in a restaurant one night, someone walks up and says, ‘Hey, where can I get one of those shirts? My cousin’s daughter has muscular dystrophy.’ That’s just like, wow.”</p>
<p>Next up is a tournament in Key West, Florida, and after that the team is off to the Chesapeake Bay in Maryland. With a parade of trucks, trailers and boats plastered with the MDA logo, the group is sure to have more encounters with people whose lives have been touched by muscle disease.</p>
<p>“We’ve got this caravan going from city to city, all with the MDA logo and our logo and pictures of the boats, out there bringing awareness to muscular dystrophy and those affected with muscle disease.”</p>
<p>For more on FFMD, visit their <a href="http://www.fishingformd.com/">website </a>or follow them on <a href="https://www.facebook.com/Fishing-for-MD-Muscular-Dystrophy-1045838065468719/?fref=ts">Facebook</a> and <a href="https://twitter.com/FishingForMD">Twitter.</a></p>
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<p>The post <a rel="nofollow" href="https://strongly.mda.org/fishing-for-muscular-dystrophy-one-mans-passion-and-purpose/">Fishing for Muscular Dystrophy: One Man’s Passion — and Purpose</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div><div class="field-item odd"><a href="/taxonomy/term/109" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Personal Stories</a></div><div class="field-item even"><a href="/taxonomy/term/115" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Sponsors</a></div><div class="field-item odd"><a href="/taxonomy/term/131" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Limb-Girdle Muscular Dystrophy (LGMD)</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/fishing-for-muscular-dystrophy-one-mans-passion-and-purpose/</div></div></div>Wed, 22 Feb 2017 06:39:20 +0000Anonymous34466 at https://www.mda.orghttps://www.mda.org/fishing-muscular-dystrophy-one-man%E2%80%99s-passion-%E2%80%94-and-purpose-0#commentsThe Ride of Their Lifehttps://www.mda.org/ride-their-life-0
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p>For the founders of the <a href="http://alsmn.als.net/">ALS Bike Trek in Minnesota</a>, the event is so much more than just a ride in the park.</p>
<p>Founder Justin Rumley lost his dad, Steve, to ALS in 2009. Rett Landers’s brother, Jim, passed from Lou Gehrig’s disease on Thanksgiving in 2008. And Everett Myers’s father, Victor, died just 26 months after being diagnosed with ALS.</p>
<p>For the three friends, the ride is about honoring their family members and raising funds for research so others don’t have to experience what they and their loved ones went through.</p>
<p>“I’d like to ride a big old fat bike all over the disease and bury it so deep that is will never appear in anyone again,” Myers says.</p>
<p>That’s exactly what crowds of bicyclists will be doing at the seventh annual ALS Bike Trek in Minnesota. The ride will take place on May 21, starting at <a href="http://www.co.washington.mn.us/index.aspx?nid=500">Big Marine Park Reserve in Marine on St. Croix, MN</a>.</p>
<p>The ride, which offers 14-, 34- and 52-mile loops, will raise money for both <a href="http://alsmn.als.net/about.aspx">Augie’s Quest and the Muscular Dystrophy Association</a>.</p>
<p>The trek’s goal this year is $300,000 to boost research, raise awareness and support those who live with muscle-debilitating diseases.</p>
<p><figure style="width: 604px" class="wp-caption alignnone"><img src="https://strongly.mda.org/assets/uploads/2016/04/Justin_with_his_father__Steve.jpg?1461703024" alt="" width="604" height="453" /><figcaption class="wp-caption-text"><em>Justin Rumley (right) with his father, Steve.</em></figcaption></figure></p>
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<p><b>A Promise Kept</b></p>
<p>Rumley’s resolve to make a difference began almost immediately after his father’s diagnosis</p>
<p>“I made a promise to my father that I was<b> </b>going to raise money and awareness until there was either a cure or I am no longer able,” Rumley says.</p>
<p>An avid cyclist and runner, Rumley ran two half-marathons in Des Moines to raise money and participated in the Tri-State Trek to End ALS.</p>
<p>Rumley’s father, meanwhile, worried his son was too focused and told him to stop working so hard and just enjoy life. But Rumley had found his passion and purpose.</p>
<p>“My dad knew no matter what he says I was going to continue on this path,” Rumley says. “So he gave me a big smile and his thumbs up since he no longer could talk.”</p>
<p>Rather than slow down, Rumley ramped up his efforts to create his own awareness-building and fundraising event. Early on, he connected with Myers and Landers, and together with other supporters, they launched ALS Bike Trek Minnesota.</p>
<p>Seven years later, the ride is still going strong and has already raised more than $644,000 to fight muscle disease.</p>
<p><figure style="width: 960px" class="wp-caption alignnone"><img src="https://strongly.mda.org/assets/uploads/2016/04/Justin_(left)_with_Everett_at_a_Trek_event.jpg?1461703048" alt="Justin (left) with Everett at a Trek event." width="960" height="639" /><figcaption class="wp-caption-text"><em>Justin Rumley (left) with Everett Myers at a Trek event</em></figcaption></figure></p>
<p><b>An Extended Family</b></p>
<p>“We all know the seriousness of ALS. But the Bike Trek team – which is much bigger than Justin, Everett, or me – chooses to create an event that unites our unique community and makes it a celebration of life,” Landers says.</p>
<p>They want this year’s event to not only raise money but also be safe and fun, Landers says. And they hope the event will continue to grow.</p>
<p>The trek was developed as a blueprint that others could use, Rumley says. They want cyclists across the country to ride their bikes all over muscle disease and give those who live with it, and their loved ones, hope for a better future.</p>
<p>“I know with the collective positive work that is the ALS Bike Trek MN, I will see the day when mothers, fathers, sons and daughters, and all their extended families and friends, can live with more hope and less despair upon hearing the words ALS in the diagnosis of a loved one for the first time,” Myers says.</p>
<p><b>Want to ride in the ALS Bike Trek MN? </b><a href="http://alsmn.als.net/register/">Register here!</a><b></b></p>
<p><figure style="width: 640px" class="wp-caption alignnone"><img src="https://strongly.mda.org/assets/uploads/2016/04/Trigve_Myers__Everett_Myers__Liv_Myers__Justin_Rumley__Annie_Rumley__Rett_Landers_and_Cindy_Landers_at_the_Twins_game_for_the_4th_of_July.jpg?1461703038" alt="" width="640" height="640" /><figcaption class="wp-caption-text"><em>(From left to right) Trigve Myers, Everett Myers, Liv Myers, Justin Rumley, Annie Rumley, Rett Landers and Cindy Landers at the Minnesota Twins game for the 4th of July. On that day, Justin Rumley raised the flag at the ballpark for the 75th anniversary of Lou Gehrig’s “Farewell to baseball” speech</em></figcaption></figure></p>
<p>The post <a rel="nofollow" href="https://strongly.mda.org/the-ride-of-their-life/">The Ride of Their Life</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div><div class="field-item odd"><a href="/taxonomy/term/109" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Personal Stories</a></div><div class="field-item even"><a href="/taxonomy/term/110" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Amyotrophic Lateral Sclerosis (ALS)</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/the-ride-of-their-life/</div></div></div>Wed, 22 Feb 2017 06:39:19 +0000Anonymous34286 at https://www.mda.orghttps://www.mda.org/ride-their-life-0#commentsWhat is the MDCC?https://www.mda.org/what-mdcc-0
<div class="field field-name-body field-type-text-with-summary field-label-hidden"><div class="field-items"><div class="field-item even" property="content:encoded"><p><img class="alignleft size-full wp-image-881" src="http://live-strongly-blog.pantheonsite.io/wp-content/uploads/2016/01/mdcc.gif" alt="mdcc" width="544" height="105" /></p>
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<p>If you are interested in muscular dystrophy research, you need to know about the MDCC…<strong> </strong></p>
<p><strong>What is the MDCC?</strong></p>
<p>You may have previously come across the acronym “MDCC” posted on MDA’s website or social media pages. MDCC stands for the Muscular Dystrophy Coordinating Committee. The Committee was established under the MD-CARE Act (formally called the Muscular Dystrophy Community Assistance Research and Education Amendments of 2001 (Public Law No. 107-84). The Act was historic as it was the first law to focus on the muscular dystrophies, and MDA is proud to have been part of the collaborative effort that advocated strongly for this bill. The Act created centers of excellence called <a href="https://www.wellstonemdcenters.nih.gov">Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers (MDCRCs)</a>; established programs at the Centers for Disease Control (CDC) focused on collecting data, improving diagnosis and developing care considerations; and directed the National Institutes of Health (NIH) and other government agencies to convene the research and clinical communities to develop a plan to coordinate research efforts. These efforts would be guided by a steering committee, which became the MDCC, that would report to Congress.</p>
<p><strong>Why is the MDCC Important?</strong></p>
<p>The MDCC is critical because it brings together Institutes across NIH with other federal agencies, patient organizations and members of the muscular dystrophy community to coordinate research and patient care activities. This coordination ensures that knowledge is shared and helps maximize opportunities for collaboration while minimizing duplication of efforts. One of the Committee’s main charges is to develop a roadmap identifying the group’s priorities and objectives, which is called the Action Plan. The first Action Plan was developed in <a href="http://mdcc.nih.gov/action_plan/mdcc-action-Plan-2006.pdf">2005</a> and the current Action Plan was finalized in 2015.</p>
<p><strong>What does the Action Plan Call For? </strong></p>
<p>The <a href="http://mdcc.nih.gov/action_plan/2015-action-Plan-to-MDCC-508comp.pdf">2015 Action Plan</a> identifies specific research objectives and other goals to help better understand the diseases, accelerate diagnosis and treatment and to help improve the lives of those living with muscular dystrophy. The Plan reflects the input of researchers and clinicians, patient advocacy groups, the various federal agencies represented on the Committee, individuals affected by muscular dystrophy and other stakeholders. The Plan covers a broad range of issues and identifies more than eighty objectives organized into five general priority areas: (1) understanding causes of the muscular dystrophies; (2) screening and diagnosis; (3) developing treatments; (4) preparing for clinical trials; and (5) providing care, management and access to services.</p>
<p><strong>Who are the Members of the MDCC?</strong></p>
<p>The MDCC comprises 15 <a href="http://mdcc.nih.gov/membership/mdcc-roster.htm">members</a>. Two-thirds of the MDCC members are representatives from government agencies who are involved in activities relevant to the muscular dystrophies and the remaining one-third are representatives from the general public who have a specific interest in or knowledge of the muscular dystrophies. The Acting Chair is <a href="http://www.niams.nih.gov/About_Us/Mission_and_Purpose/director.asp">Stephen Katz, M.D., PhD</a>, Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). MDA’s Executive VP and Chief Medical &amp; Scientific Officer, Dr. Valerie Cwik, is a current member of the MDCC.</p>
<p><strong>Learn What’s Happening at The MDCC</strong></p>
<p>Twice each year, the MDCC holds open public meetings that you may attend in person or watch live via webcast. To learn more about past meetings and the upcoming meeting scheduled for April 27, 2016, click <a href="http://mdcc.nih.gov/meetings_and_events/index.htm">here</a>.</p>
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<p>The post <a rel="nofollow" href="https://strongly.mda.org/what-is-the-mdcc/">What is the MDCC?</a> appeared first on <a rel="nofollow" href="https://strongly.mda.org">MDA</a>.</p>
</div></div></div><div class="field field-name-field-strongly-categories field-type-taxonomy-term-reference field-label-above"><div class="field-label">Strongly Categories:&nbsp;</div><div class="field-items"><div class="field-item even"><a href="/taxonomy/term/105" typeof="skos:Concept" property="rdfs:label skos:prefLabel" datatype="">Taking Action for MDA Families</a></div></div></div><div class="field field-name-field-strongly-url field-type-text field-label-above"><div class="field-label">Strongly URL:&nbsp;</div><div class="field-items"><div class="field-item even">https://strongly.mda.org/what-is-the-mdcc/</div></div></div>Tue, 21 Feb 2017 23:50:27 +0000Anonymous34651 at https://www.mda.orghttps://www.mda.org/what-mdcc-0#comments